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La Administración de Alimentos y Medicamentos de Estados Unidos (FDA por su sigla en inglés) aprobó el etranacogene dezaparvovec-drlb (HEMGENIX), la primera terapia génica de administración única para adultos con hemofilia B que reúnen los requisitos para recibirla. La terapia fue aprobada para el tratamiento de adultos con hemofilia B que actualmente utilizan terapia profiláctica con factor IX o que tienen un historial actual o previo de hemorragias que ponen en peligro la vida, o que han tenido episodios hemorrágicos espontáneos graves y repetidos.
Durante los días 27 y 28 de octubre de 2022, la Federación Mundial de Hemofilia (FMH) realizó la segunda edición de la Cumbre mundial sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés). Este evento virtual de dos días estuvo dedicado a promover el diálogo y el intercambio de conocimientos con el propósito de identificar estrategias para preservar e impulsar la atención de los trastornos de la coagulación en un mundo pandémico en rápida evolución. El objetivo del evento fue ayudar a la comunidad a estar un paso más cerca de hacer posible una atención sustentable para las personas con trastornos de la coagulación en todos lados.
I am a person with severe hemophilia A. I have completed an MSc in Applied Mathematics and an MBA from the University of Dhaka. Professionally I am a banker. I have been working for the cause of hemophilia in Bangladesh for 28 years. I am a founder member of the Hemophilia Society of Bangladesh and presently working as Vice President. I am the Program Manager of WFH PACT Program -Bangladesh. 
Guada initially joined the WFH in 2020 as the Regional Manager, Southeast Asia and Western Pacific, and is currently, the sector Head, Regional Development within the WFH Global Development department. Guada has about 30 years of experience in national and international non-for profit sector with focus on civil society capacity building and organizational development programs. Before joining the WFH, she has managed regional programs with reputable international organizations such as Save the Children and Amnesty international, as well as the USAID’s Mekong Partnership for the Environment (MPE) project under Pact, Inc., among others. Guada also holds a Master’s degree in Community Development and a Bachelor of Science in Psychology.
He graduated as medical doctor from the University of Bonn in Germany and received his specialisation in biologic haematology and transfusion medicine in Germany, the US, Canada, France and Netherlands. For 25 years, he was the medical director of the Blood Transfusion Service of the Luxembourg Red Cross. He is a member of WHO Expert Advisory Panel on Transfusion Medicine (World Health Organisation, WHO), founding president of the International Haemovigilance Network (IHN). For many years he has been involved in works with the Council of Europe (as member of the Group of Experts in Blood Transfusion and Immunohaematology), the European Commission (as national and scientific expert in blood transfusion) and the European Blood Alliance (as vice-president). In his home country, he is serving the National Haemophilia Association as president. His main areas of interest are haemovigilance, quality management in blood establishments, self-sufficiency (blood and plasma/fractionation) and voluntary non-remunerated blood donation. His favourite activities are assistance projects in blood transfusion in developing countries (such as Ecuador, Nicaragua, Haiti, Burkina Faso, Senegal, Pakistan, Vietnam, Laos and Myanmar). Together with Prof. De Vries, he has co-authored the textbook on Haemovigilance, published in 2012. He has received several international awards: in 2008, the ISBT Award (Award of the International Society of Blood Transfusion, granted to a person who has contributed significantly to blood transfusion and transfusion medicine, mainly in educational aspects), and in 2010, the IHN Award (Award of the International Haemovigilance Network, granted to a person who has contributed significantly to haemovigilance).
Julia Chadwick is currently the Education Materials Coordinator at the WFH. Julia has a Master of Science of Public Health from McGill University in Montreal, and has spent much of her career in medical education. Since joining the Research and Education department of the WFH in 2020, Julia has worked on hemophilia and von Willebrand disease guideline educational materials and translations, the PACT Advocacy Academy, and various educational webinars for the bleeding disorder community.
David Page is Director of Health Policy for the Canadian Hemophilia Society (CHS). His principal role is to advocate for access to optimal comprehensive care and the most efficacious coagulation therapies in Canada. He served as a volunteer with the CHS from 1982 to 2001, including a 2-year term as President in the 1990s. In 2001, he left the field of teaching and educational publishing to take a staff position with the CHS. He was National Executive Director from 2006 to 2017. David served on the Quebec Hemovigilance Committee advising the Minister of Health on blood safety issues from 1998 to 2006, including four years as president. He has been a member of the Héma-Québec (Quebec’s blood establishment) Safety Committee since 1999 and is now its chairperson. David served on the Executive Committee of the World Federation of Hemophilia from 2000 to 2008 and was chair of its Coagulation Products Safety, Supply and Access Committee from 2001 to 2016. David has severe factor IX deficiency.
Dejan Petrovic, President of the Board of the Serbian Haemophilia Society Dejan Petrovic has been the President of the Board of the Serbian Haemophilia Society (SHS) since December 2017. Prior to that, he was the Vice President of the Board, while he has been a member of the SHS since its establishment in 2000. During his activism in the SHS he has participated in numerous congresses, conferences, seminars, workshops in the country and abroad, and in the last few years his activities have focused on the procedure of public procurement of drugs for hemophilia, media activities and communication and negotiations with authorities. Through workshops, lectures and panel discussions, he transferred knowledge and experiences from the procedure of public procurement of drugs for hemophilia in the country and abroad, as well as experiences from advocating for patients' rights and negotiation with authorities. He has been a long-term member of the Public Procurement Committee of Medicines for Hemophilia and the National Hemophilia Committee. He is a lawyer, has been working as legal advisor with National Employment Service, married, the father of two and person with severe form of Hemophilia A.

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